Lily

My name is Alexandra and I live in Hamborg, Germany. In November 2004, I was asked by a person I know well if I wanted to have a female Beagle which had been living in his neighborhood. He had noticed that the dog was being mistreated and, although I was keen to help, I had an elderly dog of my own shared with my parents. His concerns grew for the dog’s welfare and so, Lilly came into my life.

lilyShe was just over a year old and was already on to her fourth home in her short life. She had no name and didn’t know anything. And she was a typical Beagle; greedy, pigheaded and obstinate. During the next five years, we learned to live with each other. Some furnishings had to change and I lost a lot of food but her behaviour improved greatly.

Then, in March 2010, Lilly was sleeping. Suddenly I heard a strange noise from where she was lying. She was lying in her basket and seemed to be struggling to breathe. She was completely rigid, fighting for breath and foaming at the mouth. I thought she was dying. Then she stopped breathing; her mucous membranes went blue. In my panic, I thought that she could be choking and so I opened her mouth, looking for an obstruction, but I found nothing. Then I started mouth-to-mouth resuscitation. Slowly she came back to life. This seizure seemed to last for hours – in reality it took about 3-4 minutes.  She certainly wasn’t herself and seemed unable to get up so I took her the nearest animal hospital. The drive took about 20 minutes and, thankfully, in this time she became better. When we arrived, she could walk by herself. The Doctors gave her valium and told me to come back the next day for some tests. The rest of the night was peaceful.

Next day we went back to hospital and they drew blood for tests of her thyroid, liver, kidney and so on, as well as doing neurological tests, CT scan and an EKG. All of the results came back negative; everything was fine so we were given a diagnosis of epilepsy.

Little over a week later, Lilly suffered her second grand mal seizure. One moment she was sleeping happily next to me on the couch and the next, she was completely rigid, struggling for breath and foaming at the mouth. The vet had given me Diazepam rectal tubes in case of emergency and so, I gave them to her. Once she had the medication, she recovered much quicker but was restless and fidgety during our drive to the vet. She was obviously upset and unsettled – whimpering and unable to sit still. The vet was certain, from my description of her fit, that she was suffering from epilepsy and prescribed her Phenobarbital.

It took several weeks to get the dosage right for Lily while she suffered with the side effects of her new medication – crying, staggering, falling over, a voracious appetite and being dazed. And then the myoclonus, as I know it now, started. She began to tremble; I called it her thunderstorm. It seemed as if her brain was struck by lightning which shot through the whole body. Sometimes her body jerked and jumped – so hard were the flashes.

So I started my odyssey to find out what the trembling was and how I can help her or stop it. I went from Vet to Vet – we travelled up to 600km away to see neurological specialists – and from animal hospital to animal hospital. All I heard was, “We have to increase the dose”. Once I tried it and poor Lilly was like a zombie. I knew that this was not what Lilly needed and that something was wrong. I read everything about epilepsy that I could find and asked everyone that I could if they knew what the trembling was. The internet helped a lot but nobody could help me. I started to give Lilly Taurin and stopped giving her cereals but nothing seemed to help.

A few months later, Lilly suffered from her third seizure. I expected her to fit because she had been suffering with bad myoclonus all morning so I took her to work with me (thank goodness that my boss is so understanding). On my way to work, I also noticed that Lilly was having problems with light. When we were driving through a wood, the change of sunlight and shadow would make her tremble furiously. I realized that this was the same as when I turned lights on at home or when the television flickered. I recognized this as a symptom that Clare Rusbridge had described with the Dachshunds she had treated. (http://www.veterinary-neurologist.co.uk/lafora.htm).

After this terrible third seizure, I decided to try to request an MRI for Lilly which showed that Lilly’s ventricles are too big. This suggested that she has a hydrocephalus. I showed the MRI results to several vets who did not agree. They said that her ventricles are big but they are symmetrical. No hydrocephalus and so, my search for a correct diagnosis continued.

I began to notice more unusual behavior, including her need to be stroked slowly. If you touch her in a normal speed, she would shrink away from you as if you were going to hit her. It broke my heart to see her so anxious and upset.

By this time, our family vet (who has no experience with epilepsy but was keen to help us) noticed that Lilly’s epilepsy was not typical. We decided to take Lilly to our nearest Veterinary College about 200km away from our home to see if they could give us some answers. At first, the professors were keen to increase Lilly’s doses of Phenobarbital to alleviate her symptoms but I pleaded with them to reconsider their recommendation. So, Lilly was checked from the nose to the tail which was made difficult because the light in the room was very bright and Lilly had a lot of problems with her myoclonus when they wanted to touch her. But they agreed with me! Lilly was taken to the lecture room and shown to the students and Professors alike as an example of a dog suffering with Lafora-Epilepsy. We were given an appointment for two days later for to take tissue samples and Lilly was given ‘Zonegran’ to help with the myoclonus.

Two days later we returned so that they could take samples of her cerebral fluid, muscles (from 2 legs), lymph node, spleen, liver and a lot of blood for analysis. About one week later, we received the following: “Although the analysis did not diagnostic Lafora disease safely, we can’t exclude this illness nevertheless completely”.  They still believed that she was suffering from Lafora but were unable to prove it.

Now we think that Lilly is having Lafora. ‘Zonergan’ is helping a bit but the medication is said to have a honeymoon effect so we will wait and see what its long term effects will be.

At the moment in Germany, there is a lot of snow and this is a very big problem for Lilly because of the way that it reflects light. I have bought her some ‘Doggles’; she doesn’t like them but I hope that she will get used to them. I believe that Lilly’s most recent seizure was caused by the snow. There were too many reflections for her brain to contend with when she was playing in the snow. I saw that she was experiencing severe myoclonus but she was so happy to play there that I thought I would hazard the consequences but the seizure came.

With Lilly’s epilepsy, my life changed completely. Since March 2010, I have spent more than €4000 in vets fees. I am afraid to leave her alone as she suffers from myoclonus during the day and I am worried that she will fit. Before her illness, Lilly would go into kennels when we went on holiday or would sometimes she come with us by aeroplane. This is sadly no longer possible. We are too afraid to leave her in kennels and dog sitters are not happy to look after her in her condition so we only go on holiday by car and to places where Lilly is welcome to stay. When I have to leave her alone, she has to stay in a room where she can’t harm herself if she gets a seizure. When I am at home, I am constantly worried when I am not with her. Any unusual noise will set me on edge and I will go and find her to make sure that she is okay whether it be day or night. She has to get her medicine at 7am and 7pm – no matter what happens or where we are (even on the motorway!). At the moment, her medicine costs about €200 per month. I am afraid of what the future holds for Lilly as her myoclonus worsens. I have promised her that, no matter what happens, she won’t suffer.

Alexandra C. BORCHERT

Webmaster Note:

Sadly, Lily died in May 2011 when her symptoms finally became unmanageable. I hope that Alex, like owners of other dogs that have passed away having been aflicted by this terrible disease, can take comfort in the progress now being made towards identifying it and hopefully eradicating it from the breeds we love. If you have a beagle that has been similarly affected, please do contact me and I will do all I can to help.